Last week, one of Arbor Hospice’s volunteers, Dennis Sparks, wrote the following article for Arbor Hospice’s blog. I am sharing it with you because it raises a great question. I hope it will get you thinking about your own wishes and the wishes of your loved ones.
I wanted to know because I had often heard the term “good death” in hospice conversations and I was confused about what it meant.
As a volunteer, I have observed patients and families during the “dying process,” which in the minds of many begins when a doctor delivers a fateful diagnosis, continues through sometimes grueling treatment and concludes many weeks, months or even years later.
As a volunteer, I have also co-facilitated grief support groups in which family members and others recount their often painful memories and flashbacks similar to those experienced by individuals with post-traumatic stress disorder.
Few patients and family members, I thought, would describe the dying process as “good.” But, perhaps I didn’t understand what the term “good death” meant.
So, I put my question to Gloria to help me reconcile the idea of a “good death” with my experiences. When I posed the question, I didn’t know the personal significance it would have for her.
“Hospice is about self-determination and quality of life,” Gloria told me. “It’s about how patients want to live each day. We want to know the things that are important to patients so that those things can be sustained as much as possible until the end of life.”
“Each patient defines what quality of life means for him or her,” she said, “and we support patients in having that life for as long as possible.”
“Hospice is all about exploring options. We don’t tell patients and families what is the best option for them because we truly don’t know.
Sometimes patients’ choices are a difficult thing for family members and other caregivers, and sometimes for hospice staff as well. The patient decides, and the rest of us respect that even if it is not what we would have chosen for them.”
Gloria pointed out that quality of life is more than self-determination, though.
“If pain is getting in the way of quality of life, we address that. For some, it may be symptom management, like controlling nausea so they can enjoy the foods that are special to them. For others, it may be remaining lucid to have important conversations with loved ones.”
As our conversation neared its end, Gloria told me about her mother’s death this past summer to illustrate how challenging it can be to apply the concept of self-determination, even for someone as committed to it as Gloria.
“My mother had been ill for 18 months. I wanted her to go to a doctor because she was tired and losing weight. But that was not what she wanted. Eventually, though, she agreed to go to the ER 12 days before she died.”
“Because we had done her Five Wishes, I was able to be very clear with the hospital staff and family members about what she wanted at the end, which was not to be in the hospital attached to a lot of tubes. So, I took her to The Residence of Arbor Hospice where she spent the last 36 hours of her life.”
“My mother had a good death by her definition because she wanted to be in charge of her life and did not want to die in a hospital. I can only hope that as my mother’s patient advocate, I was able to give her what she wanted.”
“A good death is a subjective thing,” Gloria told me, referring to her mother’s wishes. “Other people might look at it from the outside and wonder if it was a good death or not.”
What is your definition of a good death?
This entry was written by Dennis Sparks, Arbor Hospice Volunteer.